Feb 14th, 2007. The memory of that day is seared in my brain forever. It’s funny how memories work, how we don’t remember the details of daily life from a week ago or a month ago, but for certain events – even the smallest details stick out to you. I often replay that morning over and over again in my head.
It started off like any other morning. I had been seeing my doctor for about a month for a strange weak feeling in my leg. First, he suggested a nerve test to make sure I was feeling everything properly. Then he did some bloodwork. Next, he did an MRI. I don’t know why none of this stuff fazed me, but it didn’t. I was wholly unprepared for what was to come next.
It had started to snow – a light snowfall – at my home in Elizabeth, New Jersey. I had a doctor’s appointment in Teaneck (about a half hour away) with a neurologist – I assumed just to discuss the next steps to figure out what was causing the rather mild weakness I was feeling. My husband was working from home that day, and I decided to drive myself to the doctor. Even though it was snowing, Teaneck was home to my favorite coffee shop. Maybe I would stop in for a coffee and a muffin on the way home, a little treat on a frigid morning. I was still blissfully unaware of what was to come. But that’s how life is. You never see it coming. Until it hits you like a midnight train you didn’t realize you were standing on the tracks of.
I got to the doctor’s office a little after 10 and flipped through magazines in the waiting room. When I was finally brought to the little room to wait for him, I started to get a bit nervous. Everyone was so serious around here.
The doctor walked in, after what felt like an eternity, with 3 binders and started going over treatment options. Treatment options.
My head started to spin. I stopped the doctor mid-sentence as he was explaining the side effects of a certain drug and asked him why he was showing me all this stuff. Did I miss something? “You have multiple sclerosis,” he replied. “Nobody told you?”
I don’t know how I made it through the rest of the appointment. As I left the little room, I started to feel numb, like I couldn’t feel my fingers or toes. I made the next appointment with the doctor’s secretary and fumbled to find my keys. I remember the receptionist saying on my way out, “Glad you could make it. I’m sorry it’s MS” as if she had just told me she didn’t have change for a twenty.
I stumbled into the blinding sunlight outside, beautiful calming snow falling all around me, a sharp juxtaposition against the tumult going on inside me. My car was covered with snow. As I brushed it off the windshield, I jabbed my husband’s number into my phone. Through stinging, hot tears, I breathlessly told him what the doctor had told me. He could barely understand what I was saying.
Driving home was hard. The roads were icy. I was sobbing. I almost spun out a few times and thought about what would happen if I died right then and there. Looking back, I think about my strength was in that moment. I could have fainted. I could have left my car there and asked my husband to come get me. None of that would be implausible. But I drove myself home. In a snowstorm. I think of this moment whenever I have to remind myself – I can do hard things. I collapsed into my husband’s arms and convulsively sobbed for the rest of the day. How could this be happening to me? I felt like I was suffocating. I was only 26. My life was perfect. What happened?
Ever since my mom died suddenly when I was 8 years old, I had always thought I had had a free pass to a great life. I mean, what else could go wrong? That was pretty bad, right? And then this happened. I honestly don’t remember much of the rest of the day, but I know I spent most of it in tears, feeling sorry for myself.
That was 14 years ago. I don’t know how I made it through the months that followed, but I did. I called my best friend who helped me make an appointment with another, more attentive, and less blunt neurologist. I saw another one after that, realizing that it’s ok to get a second, or even a third or fourth opinion when it comes to your health. I will never forget the kindness of the second neurologist who told me, “You might have MS. You might not. Let’s take this one step at a time,” giving me a kind, reassuring smile. Years later, I went to his shiva and told his wife (who was working as his nurse at the time I went to see him) how much he had affected my outlook that February afternoon.
Over the next few months, with the help of excellent neurologists, I learned about my disease. I learned that it wasn’t a death sentence. I learned how to advocate for myself medically, since no one else would. I learned that going to get a second opinion, and even a third, is more than okay when it comes to your health. And I also learned that the ones who really care stick by you.
I finally settled on neurologist #3, renowned in his field for his MS care. Because of him telling me I could be on my daily injectable medication while I was pregnant, I now have four beautiful children. I thank him for those precious gifts from G-d every time I see him.
This weekend, I read I’m Your Huckleberry, Val Kilmer’s autobiography. I had no idea that Kilmer was so spiritual, and I certainly had no idea about his recent battle with throat cancer and his subsequent tracheotomy. He sums up perfectly what I try to affirm every single day. At the end of his book, Kilmer writes, “It isn’t just that everything is going to be alright. Everything is all right. Right now.”
I consider myself blessed. Blessed because my multiple sclerosis isn’t so bad. I can walk, I can run, I can dance. And I do. I am also blessed because I live with the sense of urgency that most people live with only after something terrible happens. You know that feeling you get when you hear about a young child dying tragically? The one that makes you want to hug your children or call your spouse and tell them you love them? I live with that salient feeling every day. Sure, it comes with its setbacks. I am that mom who constantly thinks something terrible is about to happen. I see a mild rash on my daughter and my mind immediately jumps to cancer. I hear my son cough in his sleep and I think he must be choking. Sure, I’m a bit of an alarmist. But that’s what comes along with having a disease that could literally leave me helpless at any moment. I am blessed. No matter what may happen tomorrow, I am blessed right now. Sometimes (more often than I’d like) I have to tell myself that. But in the moments that I just remember it, I am truly happy.
I used to have a saying on my fridge from evangelical pastor Charles Swindoll. The quote is a general one about having a positive attitude in life but one line has always resonated with me. It reads, “Life is ten percent what happens to you and ninety percent how you react to it.” We all have struggles. I know I do. I know you do, even if you don’t tell me about it. But life is all about having a positive attitude and living each day to its fullest, so that when it is our last, we can look back with no regrets.
A beautiful article Chani. A great out look. We must all enjoy the moments and be grateful everyday. Stay healthy safe and strong minded